POST #14 One year after my 2nd Transplant

My first update since January 2010!

Today is Sunday July 24, 2011. About one month ago, I was returning on a flight from Seattle, and I took time to write an update for my blog “My Unexpected Journey”. I finished it today uploaded it...and here is what I wrote..

Friday June 10, 2011. It’s about 13 months after my 2nd stem cell transplant. I’m on a plane from Seattle, Washington heading toward the east coast to Pennsylvania, coming home from a conference for my work.

Several blog readers have written to me over the past year, and have inquired how I’m doing. So, what better time than now, while I’m trapped in a small overpriced seat on a plane, and I have my 6 hours of battery life in my little Netbook, mini-laptop, so I will to take time to share how I’m doing.

I’m doing great. I'd even say I'm doing awesome-like, as someone with multiple myeloma.

I could end it here, but, thought I’d provide a little more detail.

Per my physician, I am in “excellent” remission. It isn’t “complete” remission, but I’m the disease is barely evident. Nothing in the urine, a “trace” of cellular whatever that barely registers on the MM dial. So, that’s good enough for me.

Given that I’m on airplane and do not have my latest reports with me, and I’ve never been good with numbers anyway, I can’t recall the exact IGG numbers, etc. I visit my transplant oncologist about every 6 months. I see my local oncologist monthly..but, the local visit changed to every 3 months starting in Feb of 2011. But don’t mistake this for being detached or uninterested in every morsel of info about MM, I’m about as tuned in as I can be, without it taking over my life and carrying a flag about MM— that’s just not my thing!

I have taken advantage of “power learning” experiences.. attending an MMRF patient education day in NJ in May 2010 –that was a very good experience. Took lots of notes, made some good connections. Also supported the MMRF Gala in Oct of 2010 in CT, as well as Laugh for Life event in NYC in May in 2011. Below is a photo of my mother and I at the MMRF Gala in 10/10.

I just bought my tickets for the Gala again in Oct 2011. I wish I had great wealth to do more..as the MMRF mission speaks to me, as a patient. At this point in my philanthropic life, blatantly self-serving, if I’m going to support anything—it’s going to be an initiative that can continue my (and others with MM) longevity and wellness. I’m very impressed with what the MMRF has accomplished through the Consortia of collaborative and integrated research and development of MM specialty medications and moving them forward for patient access.

I did have a little excitement last year though. In April 2010 I went in for my mammography since I had delayed it from the fall of 2009 when I had my 1st transplant. I had a call back where the words were “atypical cells”..blah blah blah, and then my head went to mush. I thought, ”you've gotta be kidding me.” I had a few follow-up tests. It was determined that it was not a “mass” but just cells..which “could” develop into something...and, the recommendation was to have that area removed. Ok, got it, fine, greeeaaat. Memory is coming back to me now about the test(s). I recall needing to lie on this table, breasts-down dropping through some kind of an opening in the table, and they needed to take an image of my one breast as it drooped – and mark exactly where these “cells” were and marked the area with flags, so the surgeon knew exactly where to remove what. Reminded me of "coordinates" that an officer looks at when peering through a periscope on the old show "Voyage To the Bottom of the Sea". Or something to that effect, anyway.



This was several weeks after I had started the Velcade as mentioned..and I was already getting weary of the needle stick in my hand every week, so as the breast jazz was moving forward, I said to my surgeon, “How about a two-fer? While you’re in there removing my nasty breast cells and would be giving me yet another red moon shaped scar, how about you put in a port?” He said “No problem”. So, that’s what he did. Yay! I was glad when all this was done & over with, that tests showed that margins were clear and all is ok.


The port was a good choice. Sometimes scar tissue can build up in your veins when you get stuck a lot by needles and it can be increasingly challenging over time to accept needles. I didn’t want to wind up with bad veins, so, the port worked well. Even better was this cream called “Emla”. I would apply Emla on top of my port area covered by a little patch of Press & Seal about 30 min prior to each time the nurse accessed my port each week. I never felt the needle entering my skin! Fabulous stuff.



I strongly recommend anyone who must have frequent needle access to consider getting a port. I’ve never had an infection (it’s completely beneath the skin) and skilled nurses would flush it each week. No big deal at all. It’s a nothing. Why endure needle sticks? Ugh! (especially if needed weekly or more frequently than that.)



That was the hub-bub for me about a year ago. Since then, I have also been on what is called “maintenance” medication since March of 2011. In addition to that Velcade (and Velcade has now ceased as of March 1, 2011. A little mini-celebration then.) I have also been on 15mg of Revlimid, the 21 day cycle, and 20 mg of Decadron (dexamethasone) every Monday.



I have been lucky. I have had absolutely no reaction to Revlimid. Decadron of course enables me to clean my house til midnight every Monday, organize drawers and do everything else under the sun..because I’m buzzing around like I’ve had interveneous Starbucks. However, it’s routine now.. I lose a little sleep Monday and Tuesday nights..and pretty much ease back to normal for the rest of the week.


My transplant oncologist also shared with me that if things stay on course..and my numbers stay in good range, I would probably stop all medication in March of 2012.



As far as other things I take: I had been on 400mg of acyclovir for 13 months, however my oncologist recently haulted that. I also take 400 iu of Vit E daily; 1000 Vit D; 1000 of Selenium (however I think I’m going to stop that soon & just eat 2 Brazil nuts every day, I think they’re better for you than popping a pill); 1000 mcg Biotin (hair/nails); 50 mg B6. I also have been taking a small scoop of ground powdered Flax Lignans (not oil, not seeds; these are the finely ground / powdered shells of the seeds—the most potent) since my diagnosis in 2009. Good for immune system.


I am careful to not go overboard at this juncture and begin to experiment with Eye of Nute, powdered pigs knuckles or some other craziness out there. My thinking now is: so far, so good. A mix of traditional medications that have worked well for me, and, that I can tolerate – plus, immune builders. I might be singing a different tune and eating freeze dried crickets from Zimbabwe if I heard that they could help and had minimal side effects, aside from the expected chirping.


And let’s face it, our immune system calls the shots. The stronger we can make our immune system by what we put INTO our bodies, how we take care of our health in terms of exercise, staying away from coughing people, washing our hands a lot, etc. – the better off we are. If you have MM and you smoke, for Pete’s sake, get a patch or some other assistance to help you with that addiction. Tobacco is a difficult drug to kick for many – you don’t want that to burden your system when you have MM. There’s help for smokers today, all kinds of choices, unlike 30 years ago. I’ve never smoked – I always thought it was gross, but I’ve known people who have and it is not a “habit” it’s a chemical addiction. Smart people get help. Stupid ones don’t. End of story. So get smart—it’s NEVER too late. Aside from lung issues (cancer or emphysema); circulation or cardiac issues, smoking gives you wrinkles and gives your skin a dreadful color. I’d be too vain for that. At age 53, I can almost watch fine lines forming on my face if I sit long enough in front of the magnifying mirror. What’s with that? Lordy. Isn’t MM enough? Can't we who have MM get a bonus, like, “You might have a stem cell transplant, be on lots of meds that end in 'ide or 'al for most of your life, but, your skin will look FABULOUS! Guess not.


Why normal cells go rogue and turn into MM, who knows. We need to treat our bodies right. And, the faster we can develop pharmaceuticals that trick MM cells into feeling that the environment within our bodies is not a happy place for them to flourish—the better off we MM patients will be, and the longer we’ll live with a “chronic” disease, versus a fatal one.


So, I also have made it a point to eat organic dairy, meats and fruits and vegetables whenever possible and when I don’t think I’m getting ripped off. At least once a week my dinner is simply a huge plate of steamed broccoli with a little butter & a sprinkle of cheese; or, brussel sprouts dressed the same (yes, I love brussel sprouts. Always have.) I also strongly attempt to shy away from anything that isn't whole grain -- breads, pastas, you-name-it.



The more you read..the more it just makes sense. Do I still indulge in things I adore like chocolate, etc.? Of course. Though I never was a chronic junk food / bad eater, I am MUCH more thoughtful about what I eat than ever before and am always reading about what’s “good” and “not good” for the body, and try new things all the time. I also eat so many blueberries and drink SO much “blue or dark berry” organic juices, I’m surprised I haven’t TURNED blue by now.



Back to how I’m feeling. I’ve never had bone breakage or bone issues from MM. I read a lot of information from patients on listserves and blogs about how MM has presented, often through a broken bone. My bones are ok. I just had a body scan about a month ago and it all looks good.


I did start back at the gym in fall of 2010. I’d say I’m at 90% of the energy level I was prior to the transplants. I am not at the gym to do what the people to the left and right of me are doing on the treadmill, stepper or on the machines as planned out by a trainer. I’m 33 in my head, but 53 in reality. Ooops. Keep forgetting that. I’m there for me, to feel good, to do “something”. A forty five minute routine is better than nothing. I hope to go to the gym more frequently than I do currently—working on that.



Oh yes. The Hair. For us girls who might be reading this, let’s talk. Here’s what happened to me. All good. By April of 2010, I stopped wearing my wig after about 3 1/2 months of hair growth. Here's my $375 wig. (below) a gift from my mother when I went wig shopping way back in August 2009 prior to my first transplant (I wanted to be READY!). The photo in my Post #12 shows my wig. I wore it from Feb through mid April 2010. A great investment. Now it's nicely packed away.

I did not actually get my hair cut at all until about June of 2010. I just let it grow. It was short of course..and wavy / curly-ish. People thought I had gone to the hairdresser! What a hoot, as I had poker-straight hair my whole life. This was intriguing, so, I thought I’d let it grow..and just see how it would look as it got longer. NO idea what “wavy longer hair” might feel like or act like. Well, it was not so great.. That inbetween length was a geeky drag, and now I actually like it on the shorter side..so I’ve kept it that way instead of growing it to a blunt-cut shoulder length..like my “old” blonde hair. Also, I had no idea really what color it would be.. as I had lightened my hair one way or another since college -- which feels like about 15 years and is actually about 30 years. OMG! Still waiting for someone to invent that Time Machine..(sigh).



My hair came in darker than I thought it would. When my hair first started to grow in (the pics with very short hair..) it had a mind of its own. My there was no ”memory” of where my hair parted or anything. It was “new” little baby waaah waaah soft hair. Now forming new patterns on my old head. Ha! I remember when my hair had started to grow back, there was sort of a swirling thing going around, close to my scalp. Surprisingly, just a few gray hair--just good genes I think in that case. If I get that gray “haze” look at some point, I may do the low-light hi-light thing.. we’ll see. I do like the new brunette Jody though.



I am accustomed to looking at myself in the mirror now as a brunette..but I must say, when I look at photos of myself, recently taken, I STILL do a double-take.. even after a year. For just a few nano seconds, I think, “Who is THAT?” Oh, that’s me. Right. This photo below was from June 2011, atop of the Seattle Space Needle. This is how I look today:

In terms of how MM has impacted my life..it’s sort of a unique chapter of a story of my life. It isn’t “my life”. I do enjoy however sharing the story when I feel it can be helpful to someone who might have MM, or, to share a perspective of life. that I find I share with people sometimes, based on the kind of con

And finally, I’ll share with you how I am in my head, 13 months post-transplant and counting.

I feel so grateful and fortunate. Not only that I feel ok, but that I do see the world differently now. Is it every minute of every day? No..but, I must say, it is every day. I realize that even though I’m doing well, there might be a time when I might not be. I’m not putting that out there as something to attract, mind you. But, I’m also a realist. I also know though—that ANYone can say that at some point, he or she may not be feeling well. Right? The only difference is, I might have a little advanced knowledge about “why”. The “when” is as unknown as it is for anyone else, frankly.


I do find I can get emotional very easily. Of course, I’ve always been that way. I’m unsure if my body chemistry has changed and exacerbated that tendency, or, because I was pushed into menopause due to high dose melphalan, or, if it’s just me.



As I sit here on this plane typing this, I am tearing up. I pause to look out the window on this gloriously clear day, looking over the plains.. patterned cornfields somewhere between Seattle WA and Charlotte NC where I’m landing in a few hours.. this is just one of the million moments I have where I just take joy in taking everything in. The beauty of this view out the window, the humor in the fact that as a passenger, I’m entitled only to free water or soda, and I can buy a “comfort package” of pillow, blanket & earplugs for $9 from US Air, or, I can buy a “snack”. The lunacy of life. I just love to experience it.


At work, the same thing..if I had a dollar for every time I fight off tears when talking about something that touches something within me with colleagues, I’d be rich. I have to focus sometimes on thought patterns that I hope might clamp off my tear ducts..but I haven’t quite mastered that yet. Sometimes it doesn’t help that listen to an emotional song on my iPod either or flip it over to Lady Gaga or some other outrageous tune. I should turn the darn thing off.


Oh well. The mystery of mind over body. And so it goes for me – this is just me.


I have begun to do some things I haven’t done before..nothing outlandish, but, things that bring me joy. Rode in a hot air balloon with friends last summer. That was a blast. I want to do some traveling. I try to keep perspective on what is important to me, how I truly want to spend my time, every day, every hour, almost every moment.


I find myself observing people and the dialogs they have.. a lot more than before MM. I am amused at the seemingly serious content of conversation people engage in; I sit back and smile inwardly ...as I find much of the time in the grand scheme of things, it is often not very important. However I do respect and never ever belittle what is being discussed, and I often join in. But I may reflect to myself silently afterwards.. thinking how people can actually worry or be concerned about “X”..Lordy.. let me tell you about being worried or concerned.. ha! And from time to time, I may say to myself “this is nuts.” And I laugh to myself. I’d say most of the time however, I move along and swim with the rest.. standing true to what I believe in along the way and I enjoy feeling how I am and who I am. I think going “through stuff”, whether a death, a disease, a “bad time”, however defined, does being to etch a new path of thinking as you move forward in life.

So, I’m finished for now. Thanks again for taking to time to read this. I'd be more than happy to connect with anyone reading this who has questions, needs clarification, or just needs a listener. I'm good at that.

Take care all, and I will post again when something post-worthy occurs!

Jody

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POST #13 - 2nd Transplant: Something Old Something New

NOTE: To Blog readers, I have elected to add a "word verification" step to leave a comment on my Blog (a word you'll be prompted to retype in a box). Sadly, I found several spam comments posted that required my removal, so, I'm told adding this step may keep the automated "spammers" away. We'll see. I hope it works. Sorry for the inconvenience.. Jody


If this is the first Post you’re reading of my Blog, (my most recent Post automatically appears first) you may want to read Post #12, then continue and read this one. Look to the right on this page.. and click on January, then click on Post #12.

It’s 4:45am, Wednesday January 20. I haven’t written since last Wednesday, January 13th.
So, I’m propped up in bed, again, with my brand new Asus Netbook, and my new Blackberry, and my iPod is charging. God, if I accidently spill water on my bed I’ll electrocute myself, or short out my toys!

My room is somewhat sunny. The view is much nicer than I had before.. I can see trees without leaves, white snow on the ground.. all that's missing are are silouettes of deer slowly meandering through the trees, sniffing at prizes to eat beneath the snow. I'm told that deer can be spotted now and then. So, as I reflect upon the past seven days from finishing Post #12, it’s been, again, interesting, encouraging and more tolerable of an experience so far.

What has made it more tolerable this time? I can think of 6 possible reasons, aside from the view from my window:

1. Fewer “unknowns”

I experienced all of this in October 2009, so, consciously and subconsciously--there is a sense of familiarity, which can translate into “calm” and may further translate into feeling better. (Such the scientist I am, eh?) But I do believe there’s truth in this.

Also, the professional word on the street is: 2nd transplants may go more smoothly than the first..however, everyone is different.

Before coming to Hershey, up front, I had to once again have a catheter placed in me at my hospital on January 7th. I knew what that would be like. (grrrrrrrrrrr) However this time, a different toy was placed--a less bulky catheter, as I would not be going thru the apherisis process again. Mine, pictured here, is a “power” type, meaning, it can withstand higher pressure than other catheters. (Yea, whatever..I’m just pleased that it is not as large or felt as awkward as the one I had last fall.) I can shower normally (with ample coverage of Press and Seal plastic wrap). Also, I did not experience the body stiffness after the catheter was placed.

2. Perhaps I am better prepared for the “hospital stay” and all it’s joys

Reasons for why this time has been more tolerable (or, less awful) could also be physical/mental preparedness for the stay. Having never been overnight in a hospital in my life until my first transplant last fall, I was not as prepared for living in a hospital room for 2 ½ weeks as I would like to have been. This time, I had my act more together. I brought trays to hold my “stuff” on my rolling bedside table, I had ample chapstick, hand cream and other things ready to go. I brought little juice bottles for my room fridge which seemed to help me as something I could keep down. I have mentioned my techno toys that I’ve brought with me now and what good are they without a handy dandy power strip, so I tossed THAT in my duffle bag. (I’m just TOO brilliant for words, eh?) Having felt so poorly last fall, I wasn’t sure if I’d be reading, so, I was more particular about what I brought along this time. Minimal clothing of course--last time I brought scarves to wear on my head (what was I thinking??!!) Forget it, this time, no scarves, just the natural fuzzy head, however, multiple pairs of pj’s are a must and a robe + slippers. I’m fortunate, my sister was with me again each day, stayed at Hope Lodge and could launder my clothes. Hospitals will always furnish gowns..but, I’d rather have my own bed clothes. I think the more I prepared for and “thought out” the hospital stay, the more in control I felt…and, thus, I was less stressed out,

3. I have not felt “as sick” as I did during the first transplant

Well, this has certainly made a huge difference in why this time around is more tolerable. From the beginning of my stay, Day One was a lot better because I DIDN’T have an incapacitating migraine as I did in October. Most likely the reason for that was stress. This time, maybe I was just less stressed out. I knew what was coming. Been there, done that, as they say.

I also have not felt as sick in general this time, as there has been NO need for dilaudid, the mega mind-bending medication that kept me pretty wasted for part of the two weeks in October. So far, I have only become physically ill ONCE (the V Word) since I’ve been here. It’s incredible. YAHOO!

There are still daily episodes of nausea for which I receive compazine, I can be easily lulled into thinking “Gee, I feel GREAT!”, but all I have to do is picture a plate of scrambled eggs in my head, or lift the brown cover off of my lunch plate and get a wiff of whatever it is that’s waiting for me…and I’m a goner. I definitely don’t feel “normal”.

I’ve discovered the Magic Food and Beverage for Me: a grilled cheese sandwich and chocolate milk. I haven’t had this much chocolate milk since I was..oh Hell, how about never! I’m convinced--a few more days of this, and I’ll leave here with my skin sporting a deep tan. I love chocolate..and it just “works” for me, especially when it’s “pill time” for I have to take about 15 or so oral meds per day. Taking meds with water when water doesn’t taste like water, is rough. I even order chocolate milk every day on my menu selection and I’m now an official hoarder of chocolate milk. (hopefully it won’t lead to hoarding other things and I’ll wind up on that TV program…”Hoarders”.)

Yes, I’m always a bit deflated when one of the revolving door of wonderful nurses enters my room holding a bundle of blister packs which hold my pills..it’s very depressing. But, I must do what I must do. Last time, I had several rolls of lifesavers..I brought a bag of “gummy” lifesavers this time--and having something mildly sweet does counteract nausea, at least for me. My final splurge was buying a big handful of those Russell Stover choclolate covered marshmallow hearts that they have on sale right now as Feb. 14 is approaching. Chocolate covered marshmallow ANYTHING is like a drug for me..I love it. I wished they had the ones where the marshallow itself is flavored with chocolate..but, I seem to only find those as Santas around Christmas, or eggs at Easter. Nuts!

4. The SCT Process -- Been there, done that, sort of.

The process of receiving chemo (melphalan) the first day, January 11th, was again, familiar. It may have made this experience more tolerable. I knew what was coming. However this time, I chewed and crunched 5 cups of ice before, during and after the chemo was administered, for about an 90 minutes. I have one numbed mouth, that‘s for sure, to the point where I was slurring my words. In October, I don’t believe I downed as much ice. Unsure to what degree this fact has contributed to me NOT getting another case of mucositis to date. Mucositis is severe inflamation. I’m neutropenic as of today (white blood cell count is 0.1..the ol’ immune system is pretty much cooked) so, mucositis could still be coming, but I’m thinking positive thoughts. Mucositis often happens a week or so after administration of melphalan..as it wipes out quickly reproducing cells (mucus). The G.I. track is effected. We’ll see what happens in the next 5+ days remaining) I have had not one mouth sore or any throat irritation whatsoever!!

The SCT infusion process went well last week. Picture below shows a close-up of the stem cell cooler that is wheeled into my room with two little frozen Jody StemCellsicles. (the cooler looks sort of like a caterer’s vegetable steamer). The technician then takes one pack of my cells out at a time and warms it, and quickly puts them into the syringe. I believe the cells do not have a long life if unfrozen, so, there was no dawdling in any of this process.

During and after the infusion, to keep my mind occupied, I had an opportunity to talk further with my physician. I asked him, “Now, if I were to have the melphalan and NOT receive my stem cells.. would it take me several months to recuperate versus weeks?” He replied, “Doing a stem cell transplant--meaning giving you your own or a donor’s stem cells-- is a “rescue” from receiving the melphalan. Melphalan is a lethal dosage.”

Well, HEY now. As you can imagine, my eyes corked out like Daffy Duck’s when he’s surprised by Elmer toting a gun, when I heard the L word, in this instance, “lethal”. I started to do an internal mantra about this new bit of news.. .”ok Jody.. it went well the first time last fall…melphalan did it’s thing and the stem cells did theirs..ok,.ok..check. So, THIS time should be fine; My stem cells “know what to do” when they enter my body….ok..ok..” My 5 second panic attack subsided. Yep, “lethal” sure does command your attention. I had trust in the process though,

I also learned if I were to need (at some point in my life) an allogeneic transplant, meaning donor stem cells--my blood type would permanently change to my donor’s blood type. Wild, eh? Makes sense though.

5. Great clinical care

The fifth thing that made this more tolerable, is that I continue to have great confidence in my physicians at Lehigh Valley Health Network, Dr. Eliot Friedman, and at Penn State Hershey Medical Center, Dr. Giampaolo Talamo. I happily visit each at their respective offices and communication is always open between me and each of them--and, they communicate with each other as needed as well. They always make time for me. I walk into my appointments with my typed list of questions, mention the searches I’ve done on the web about various treatments or medications, and other questions that I have which could be totally out of left field (Inquiring minds want to know!).. And we have a dialog. I have never been pushed into something I didn’t want to do or experience and my questions have always been answered. They, too, provide information to me and ask questions in a direct manner, --I prefer that. It’s my life, after all..not a time for being wishy washy and sugar-coated.

The nurse transplant coordinator at Hershey, Mitzi Lowe, has also been an integral part of my high level of satisfaction with the transplants. Mitzi follows transplant patients for Dr. Talamo in every possible twist and turn, producing calendars, making appointments, advising regarding medications, etc. She’s always available when I call--I swear, she must have a communication micro chip implanted in her, for she responds so quickly when I attempt to reach her, no matter how I try to connect, phone or email.

The nursing staff and nurse assistants at Hershey are second to none. Totally professional, intelligent, cordial, kind.

Similarly at Lehigh Valley, the staff at Dr. Friedman’s practice are spectacular, Stephanie Sharma, and too many folks to mention. Just fabulous.

6. Luck, prayer and good energy

This is the 6th (three-part) reason why perhaps, this time around, this process has not been as grueling. Every patient is different, thus, MM effects people differently. So, that’s a generic kind of “luck”. I’m also huge believer in mental attitude, prayer and giving and receiving good energy about whatever maybe happening in one’s life.
I’ll end this post to my Blog for now. I may add on to this before I am discharged. Thanks for reading.

Today is Monday January 25th

The past five days have been fairly uneventful, and I am grateful. Even though the nausea is with me 24/7 in the background, and it is more pronounced after each meal.. it pales to my experience in October, in a good way. I've still only required anti-nausea medication a few times, which is great.

Each day I've been visited by a physician and Oncology Fellow, as well as the transplant nurse practioner--they have all been pleased to hear of my status, and that mucositis simply never reared it's awful head this time around. I've been diligently rinsing with saline several times a day, along withe prescribed 4x per day "nystatin", another med which helps to ease or prevent the mouth sore / mucositis situation.

I'm feeling pretty good, though I have stiffness/soreness in my bones, probably from the daily Neupogen injections which stimulate the stem cells.

I'm delighted to report that about an hour ago, I was told that my counts were at a level where I can be discharged TODAY, the anticipated penciled-in day. (last October my stay was extended three days).

I can't express in words how thrilled I am. I've whirled around packing my belongings and I'm waiting anxiously for my mother to pick me up in the glorious rain to take me home. My netbook computer is the only thing I haven't packed up, techno geek that I am, I guess.


In closing, I remain to be grateful that this second transplant was more tolerable than last time. For those who have MM and are reading this.. you may be fortunate and have a transplant that may, too, be just fine even if it's your first (and only) one. All I can suggest is to be prepared in all the ways that you can possibly be. I hope perhaps a few things from all of my postings in this Blog may be helpful to you. And for all who are who are reading this, thank you for your kind thoughts, prayer and energy.

Now let's all go, and LIVE!



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POST #12 - Between Transplants - Stuff I’ve Experienced and Learned

Today is Wednesday January 13th 2010. I am an inpatient at Penn State Hershey Medical Center for my second autologous SCT (stem cell transplant using my own previously harvested cells) following a “tandem” protocol. The second SCT was recommended to occur during the first six months after the first--the earlier part of those six months, the better. I’ve been here in my room on the 6th floor in the Transplant Unit for two days.

I want to do a little dot-connecting between my Post #11 in November, or in television--known as the previous episode--I was advised to take several weeks of rest after my October SCT, and in my case, it wound up being about four-plus weeks before returning to normal schedule of work / home life. For me, this meant returning to work on December 2nd.

The next few paragraphs in this post will focus on post-SCT clinical experiences and personal thoughts. Hopefully, this may be helpful to readers who have MM or may have a loved one for whom they are helping in their care journey, or, if you just feel like reading something.. it’s all fine. This is my perspective from my own experience, this is what my Blog is all about.

Many of the pamphlets and guides I have read which are dedicated to the patient and the SCT experience note that a patient may not truly feel “normal” until about six months following a transplant because of how it effects you, systemically. However, it doesn’t mean one cannot return to work, but it may mean as a human who’s gone through a pretty heavy duty experience, definition and timing of when one “feels normal” is relative.

Normalcy for me had not arrived yet at a personal level, (and obviously derailed by the second transplant experience) but basically, yea, I was normal “enough” in four weeks post-transplant. December 2nd was my official day when I declared “normalcy”, marked by happily marching back to work.

Initially, I thought I wouldn’t need all of that time to rest in November, but I did. So I put away my Linda Carter outfit and rested. I was told I could resume normal activity, but my system was still not “back” yet. I deliberately stayed away from all things that could make me sick..especially people. When I had to have blood tests and doctor’s appointments at my hospital in November, I wore a mask on most occasions. I also wore a mask in grocery stores. I mean -- who cares if people stare at you with a mask? A little intrigue of the germ-free kind. And without saying, I washed my hands (and still do) like a textbook obsessive compulsive. I didn’t want to catch a flu germ that would take me down after I’d gone through all of THIS!! No WAY!! I’ve been lucky..I haven’t caught any cold or flu in at least 8 months.

One follow-up piece, post SCT, was for a follow-up Bone Marrow Biopsy (BMB) on November 30th. I’m thrilled to share this biopsy was a “nothing” as far as pain or discomfort. Being fairly direct when I speak to my physicians or nurses, I said to my physician..”I really don’t want to have any pain with this..what can we do here?” I was given 1 pill of morphine and also 1 muscle relaxant. NO PAIN, NO NOTHING!! My physician’s technique, I’m sure, was also a huge part of it, however, anyone reading this who may have a BMB in the future, don’t be shy about pain medication. Why suffer? Lordy! Speak up!

The report came back a few days later and Dr. Talamo, my Hershey physician, was a bit disappointed that it indicated 11% disease. When I met with him to discuss, we talked about that a bit and he always strives for “the best”, and the closest to a “cure” state as possible. I get it now. “Disappointment” was relative to that goal. He added several up-notes, that I’m basically responding well, and that often patients who are not in “complete or almost” remission at this time after their first SCT, fair even better with the tandem SCT protocol. Sounded good to me. And, he put me on a “bridge” regimen of meds in December: including one 14 day cycle of Revlimid, and (I think…brain fade..) it was 4 treatments of Velcade, that is pushed into an I.V. after I’ve had saline for about 30 minutes. I also took 20mg of dexamethazone on the “Velcade day”, and 20mg on the day after Velcade. All in all, no side effects worth mentioning--I was used to the red-faced dex side effect and some minor constipation--but no big deal.

So, getting back to the 11% disease conversation..I talked with him about the reliability of BMB’s.. as a needle is inserted in ONE place in your body/bone to extract cells. Myeloma cells cluster here and there. So.. is it 100% reliable? Yes and no. Another area may have revealed 3%, yet another..maybe higher than 11%. But--it’s still real data--it’s something. Then I asked him, “OK, let’s say, no matter what, I wind up with 11% disease..and NEVER lower, to a more desired 5% or less, which is considered in or near remission.. CAN I LIVE at 11% disease, or will I die?” Answer: I can live with 11% disease. Well, that sounded pretty good too. Also..I started out in April 2009 with a diagnosis at 80% disease.. so, the combo of medications and SCT has been collectively positive, for sure!

As those who have MM know..it’s all about watching numbers.-- for me, it‘s IGG, M-spike, etc. If numbers climb, another intervention is introduced.

November came to an end, and my declaration of normalcy was about to begin. I was going to begin the cycle of medication treatments, and time to head back to work. I don’t think I have mentioned this yet, but my job is as a Sr. Organizational Development Consultant for Lehigh Valley Health Network in Allentown PA, about an hour or so north of Philadelphia and under 2 two hours from New York City. It’s a fabulous hospital and organization, and my job is very rewarding at many levels.

The day came of my return to work, wearing new hair (a great wig) and all.. It was, admittedly a little surreal on that day. I had never been away from any job I’ve had in my life for an extended period of time. It was heartwarming to have friends and colleagues come up to me and inquire how I was doing, happy to see me. It was just wonderful, really. I think that experience (returning to work and talking to people) is the continuing part of the wellness process within all of us that move through illness or other life-impacting experience. Positive energy works..I’m 100% certain.

Reconnecting with people after an illness, I believe, can also put other people at ease within themselves about things that can be, to put it bluntly, scary. Cancer, I‘d suggest, can be put into that “scary“ bucket of life. As I reconnected with people..perhaps some of the internal emotions and thinking of folks I ran into may have been... “Jody, looks good…She doesn’t look gaunt or fragile. She doesn’t seem “sick!” Or the bottomline of it all: “She’s ALIVE!!” My resurfacing back into the flow may have reaffirmed for some people their private thoughts like “Gee, if she’s OK, then if it (cancer) would ever come close to ME, then I’ll be ok.”

We’re all human, right?

Having MM, similar to other conditions, means that ongoing doctors’ appointments, various tests and interventions, trips to the pharmacy and co-pays are now as routine as having coffee in the morning. I used to be a go-to-doctor-for-a-bad-cold kind of gal. Well, my world shifted off it’s axis almost a year ago now, after my 4/7/09 diagnosis of MM, and now with the pre/post SCT stuff, it’s in another solar system. I’m a member of a New Club, for sure.

Interestingly, for years--in diners, in stores, or at family gatherings, I would hear people of an older generation talking about their own health or their friends‘ health. SO many stories. I naively thought to myself (moreso when I was MUCH younger than today..) “Gee, aren’t there other topics to talk about? What’s the deal?” How silly of me. I think about today, and how our country is struggling with healthcare at a national level, healthcare is no longer just a topic for the older generations, most certainly. Managing one’s own health or health of a family member is HUGE, no matter how you look at it.

What else was I doing in terms of complimentary care, in relation to MM? I started taking my flax lignans again every day..a ground powder that resembles wheat germ in color and you place a tiny scoop in oatmeal, yogurt or whatever. Flax lignans, the ground SHELLS of flax seeds, are for building the immune system--better than flax oil. (Look it up.) I’m also eating a much more careful diet.. I eat a brazil nut a few times per week, loaded in Selenium, also an immune system strengthener. Fighting cancer (or, disease in general) is all very connected to the strength of the immune system. I talked with my doctor about curcumin as well--tons of stuff out there about it; and it’s being trialed, some 30% decent response..but, it’s not approved yet so I’m not going there.

I’m also eating more organic foods. I’m not turning into a total sprouthead though, going vegan, wearing gauze shirts, year-round Birkenstocks and ditching my make-up. Uh, no. (Not that there’s anything wrong with that, borrowing a Seinfeld line). I’m simply taking even GREATER charge and awareness of what I put in my mouth--one of the many things we can control. I’m more aware of foods that are canned or packaged in a country where I have my doubts about their food processing. I’ve read one too many legitimate articles of late that speak to the FDA and regulatory holes in the system with imported foods. Even Dole fruit is now all packaged in China or Indonesia. What is that about? I think we all know the answer, but, that’s a whole other Blog! (Ha!) There were recent reports in the news (Jan 2010) about other manufactured and imported non-food products, especially decorated plastics for children, that are made of known carcinogens. Read your packages, cans & boxes. I’m a rabid label reader, thanks to my mother. Yep, I wear my cheap drugstore readers on my head in the supermarket all the time. Funny, can’t feel them on my head when I’m wearing my wig!

Building the immune system is in our own hands in many ways. Have you read Dr. David Servan-Schreiber’s book entitled “The Anti-Cancer Diet”? I picked it up & couldn’t put it down. Wait till you read HIS personal story. You’ll want to just blowup your refrigerator and pantry and start over. I did a two-second Google search just now as I am typing this and found this website, below. There’s a lot out there about this book though. Go to the bookstore and page through it. An academic physician researcher who was shockingly diagnosed with a brain tumor and he took charge of his own plan. It’s not a typical “cancer/health” book.

http://www.dailymail.co.uk/home/you/article-1025497/The-anti-cancer-diet--introducing-healthy-new-way-life.html


My hair has begun to regrow.. I have ¾ inch light brown soft fuzz all over my head. Sort of like soft duck feathers. My hair started to grow in the middle of December. At first it was weird seeing the regrowth..I was SO accustomed to No Hair, the nice clean scalp. Then..I’d look in the mirror with this crew cut thing emerging..I said to my family, “Good God, I look like some radical.. All I need is a few dozen piercings and a wicked tattoo and I’d be all set!“ It seems to be coming back evenly versus patchy.

My eyelashes were quite sparce by the time I returned to work, and my eyebrows were quite thin. Now, both are back and are fairly full. I’m unsure what Melphalan will do this time..if I will lose all my hair on my head, or, if it may “thin”--which the latter is what is stated when I’ve read a description of side effects of Melphalan. None of that matters really when you buy a decent wig, (ha!) see below. Fuzzyhead and Wiggy:

So, now I’ll close out this Post #12 to my Blog. The next one will be about the actual 2nd transplant process and more things I‘ve learned. Thanks for reading.

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POST #11 - Recuperating at Home: After the Storm

Today is Friday November 13th.  Friday the 13th has always been good or lucky for me vs. the superstition that some believe goes along with this day--so let’s start there on a "up" note.  I’ve been recuperating at my own home now since November 2nd. That included my 52nd birthday as well (..I still find it bizarre that I can be 52…where has the time gone? I thought I was about 35?  Didn't I just graduate from college about 15 years ago? Yea, right..Holy moly..) but in any event, it has been absolutely delightful being HERE versus in the hospital. Especially the first week, I would just break down and start crying for no reason, other than the joy of being home. Incredibly simplistic and so overwhelmingly wonderful.

When I was discharged from Hershey, I had 7 prescriptions for acyclovir, amoxicillin, fluconazole, prilosec, potassium and compazine. Oh yea, and a hydrocortisone cream for post-hive annoyance. (sigh). Taking a fistful of pills daily was not exactly thrilling for me..and the potassium pills are gigantic. The good news is, I’m now down to just 1 pill: acyclovir, which I’ve learned I need to be taking once per day for A YEAR.. as it is important to do so to reduce the chance of getting shingles down the road.
Interestingly, my blood pressure spiked the last few days at Hershey, so I obtained a new hypertension medication (I have been on meds for that condition for about 12 years..both parents are hypertensive, so, I get it honestly). Without meds, we’re talking 170 / 110. With meds, 130 / 72 or thereabouts. However, since I’ve been home.. my BP is low & normal without medication… unsure why that’s the case. I knew that the MM meds I took since April & ceased taking in early September caused my BP to normalize as well and my hypertension meds were not necessary for those five months. Hmm.. that’s one positive thing about having multiple myeloma—now where’s my list and I’ll add this to it.  Oh wait.  I don’t’ have a list.

Re: vaccinations.. early in 2009, prior to my diagnosis of multiple myeloma, I paid extra (since I’m under 60) and had the shingles vaccine. Several people I know, including family members, have had shingles in the past few years and after seeing unbelievable suffering first hand from THAT awful condition, I knew it was one thing I’d like to avoid. Another weird auto-immune related condition that can surface for a number of reasons after lying dormant. Now, interestingly, THAT vaccine, and in addition, ALL of the vaccines/immunizations I had the day I was BORN and in very early childhood.. may basically be null and void due to the chemo/transplant process. I’ve been told that I will have to be revaccinated for EVERYTHING sometime within the first year after my treatments have concluded. That was a new one to learn. I was sharing this with a friend and he said “Gee, it’s like you have to be rebooted.” Ha! Makes me a little nervous..and I’m not sure why, exactly. But, of course I’ll move ahead with it as prescribed when the time comes. I just don’t want my system to crash after the reboot. Maybe Windows 7 will help. ;-)

The 2nd day after I returned to my home, I had an appointment to have my big honkin' apherisis catheter removed.  Understandably, after 2+ months, the little bugger was happy in my upper chest. It made friends with my surrounding tissues and began to cling to it, and from what I learned during the 5 or 10 minutes (which seemed like an hour) when it was being removed.. there is a “cuff” at the end of the tube that was in my jugular vein..and it just didn’t want to come out easily. Local injections of lidocaine kept me from feeling pain in the area, but there was applied pressure and heavy tugging that was felt instead. Weird ..but the end result was worth it. The area was tender for over a week, and just yesterday I became giant BandAid-FREE on that spot. I no longer feel like a Star Trek cyborg and I can wear a turtleneck. Yay!

I was told that I would be feeling stronger each day..but, I would be fatigued moreso than anything. I thought “yea yea ... fatigue, fatague..…we’ll see about that.” Well, I’m seeing now they were oh-so-correct. Being tired & feeling “spent” is a new feeling to me. Every day here at home, I wake up and think “well, TODAY I’m going to do this, that and the other thing..” in the confines of my own home. I barely make it to “this” and I have to rest on my sofa. Sad, eh? But, I am now a believer in rest. The fatigue, plus my sleep pattern that’s still not normal ..as I wake up at about 3am or 3:30am every night and can’t seem to go back to sleep.. does do a number on you after while. The expected fatigue from going through this process, coupled with the thrown-off sleep pattern.. no wonder I feel fatigued..(sigh). It’s getting a little old now, I must say. I do try & get out at least once a day or every other day.. the Big Outing is 10 minutes at the grocery store which is about 5 minutes from my house.

I took a chance yesterday & went to the dept. store (for an additional 10 minutes) that is adjacent to the grocery store to buy a scarf for my no-hair head. Interesting.. kind sales associates in the store commented on “how well I wear a scarf”..and they looked at me with big (kind and sincere) cow eyes..probably realizing I have no hair and the reasons for it. Then I quickly created my own stories about that, remembering my own reality, and I had to fight off the tears..always a big challenge for me as I can cry at the drop of a hat. (sigh). The whole hair thing is something i'm getting used to. I've managed to hang onto my eyebrows by some miracle..though they're thinner.  And my eyelashes are very thin as well, but the magic of mascara helps. I have options with my hair.. I can scarf it, which I'm sure I will as I have tons of scarves..however I also have two wigs:  one is a full wig that I purchased back in August as I wanted to get all fo this buttoned up before I left on a medical leave..it is probably the color of my "real" hair. We'll see..whenever it decides to grow in. The other is a partial wig, that one must wear under a hat or scarf--because there is no top, just lace elastic that keeps it on your head.  Pretty cool. (though I look like a scary clown or maybe Ben Franklin if I take off the cap..with the longer hair & zero on top -- Ha!) but, it's still fun for a quick & different look. (see both below).

Anyway, I probably over-did it during that extended outing.. between the time and the emotion expended. …because I came home and had to lie down. God, I feel like some old lady sometimes.  Lesson learned, for sure. Now I know why they say 4 ot 6 weeks recuperation time..I"m taking almost 4, so, I hope the next final two weeks I zoom into feeling really great & re-energized!  I do notice I have more energy in the morning.. I really fade as the day goes on.  Glad I now have a DVR and can record some of the worthwhile television to view when I’m awake.

As I continue my hermit-mode at home, I'm still figuring out what I can eat, and what isn't good (yet). My entire G.I. system is out of wack, most certainly.  Morning nausea doesn't happen as frequently any more..but every time I eat..there's a "hmmmm"  afterwards..as I try to discern if it was a good idea or not to eat whatever it was that's now working its way through me. (sigh).  The advantage of being a hermit is you're always close to a bathroom.  Your OWN bathroom, an added bonus.

One-on-one interaction with people (who aren’t sick) is ok..or, breezing quickly through a grocery store as needed.  But, given the seasonal and swine flu that are still swirling around..when I visit my hospital where I work (Lehigh Valley Health Network) where I see my oncologist or get bloodwork.-- I take precautions when I visit the hospital.  I'm sort of incognito.. wearing a scarf on my head, and also a mask over my mouth/nose.  People are coughing in the waiting rooms..it just freaks me out. I look forward to when it’s ok to simply be in meetings again after I return to work.. and to go to the movies and be “normal” and not be so paranoid. Pre-treatment, I also LOVED going out to dinner.. now, my mind can’t help creating stories about “..hmm..I wonder how well they’ve washed the lettuce?” and my mental appetite drops to zero.  I haven’t been to a restaurant of course—but I’ve gotta get back in the saddle soon. I don’t want to turn into Howard Hughes after all this. There’ll be Jody at her desk, wearing a head to foot zippered suit with an oxygen mask, (sigh). This experience [at least for me] does a number on your brain about cleanliness, germs and infection, for sure.

So, this may be my final Post in this blog of mine. Should I have the 2nd transplant in early 2010, based on the results of the November 30th bone marrow biopsy.. I may continue with that experience and write more. Or, should anything occur that I feel compelled to capture in writing..I may do so between now and then. I have received communication from people who are multiple myeloma patients..and have found this chronicle helpful. It has also been a way to keep friends and colleagues informed about what’s going on with me. I purposefully have kept names of physicians and nurses private, though all have been absolutely wonderful at Penn State Hershey Medical Center and at Lehigh Valley Health Network.

Though each person like myself, someone with multiple myeloma, is different and goes through the experience differently.. there are some core things that may be the same. This has been my journey, thus far. I know there are people with health situations that are far far worse than what I have experienced, and I empathize with them. I have learned a great deal about myself and about things that truly matter to me. I do see all kinds of things differently now. Perhaps these are some of the things I would have never learned if this condition had never surfaced in me. In my search for “the why” behind making sense of why this cancer came into my life, maybe that’s a start.

I continue to feel fortunate.

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POST #10 - My Publicly Private Storm

Posts #8, #9, #10 are new, as of today.  If you have read up through #7, you may want to start with #8. 


Today is October 29. I was discharged yesterday, October 28 from Hershey, which was two days later than my anticipated discharge date of Monday October 26 (albeit a soft date to begin with; I consciously knew that..but oh how I clung to that date as I began to bottom out after writing my Post #8 and #9 when I still felt pretty well. This post will probably not appear until October 30th as I'm not fully up to speed yet... at all. )

How can I begin to explain my experience over the past two weeks?
First, having the support of my family was numero uno. My sister stayed with me each day until about 8pm or so. Words cannot express how wonderful it was to have someone there. There were blocks of time when we didn't even speak because I was so in and out of it due to the medications. “Good” times enabled card playing. She Googled “rummy” on her Palm Treo and found basic playing rules for a game—(which neither of us could recall that last time we played...so rules sorta helped). On days I didn't feel awful, it was exciting to play and feel normal. My mother visiting for several hours on different days to lay eyes on me to ensure I was simply “there” knowing full well what was going on, was nice. Through my mother's eyes, I'm sure seeing and talking to your bald pale daughter in pain, evenso, was still comforting and reassuring that I was “ok”. Yet I didn't want her to be overwhelmed, either. I'm glad the days she was there were my “better” days. Yes, my two best buddies, surgically masked and doing their best to keep me germ free, (a rule for transplant patients) brightened my stay. I could be myself: sick, vomiting, pissed off, happy, making jokes, whatever. They know me.

The nurses, nursing aids and everyone else was spectacular on the Cancer Institute unit.. where most patients go who have chemo and/or stem cell transplants. Everyone was almost clairvoyant..knowing what I may need even before I asked. Also, I was visited by a physician at least once per day—all knew my case, knew my test results, were fully informed. They all knew me in a different way, which was great.

How did I actually feel?
The first week was more fluctuatingly brutal as the 2nd week, which was more steadily brutal. (ha!) As time moved forward, I felt more consistently ill. Everyone shared with me in advance that that as my blood count numbers dropped and I became neutropenic, (really low blood counts.. highest risk for bacterial infection and other things), I'd feel progressively worse. Seeing is believing and trust me, feeling is believing. I had a full, sick feeling all the time. I had to carefully sip water, and while doing so, thinking of different images ..or I could not finish the water. I began to even loathe the styrofoam cups with a flexible straw—I wanted to throw it against the wall, but, I didn't. Cell phone vibrated..just couldn't answer it. Didn't return any texts. Just laid there in bed, trying to sleep. I didn't have sharp aches or pains..just a blanket nausea of a different type than I had experienced with a flu or virus. When I felt less awful, I could watch television or read. The 2nd week was much rougher than the first, even with my awful, unplanned start of that migraine on my first day.

The mission of melphalan, the high dose chemo I received my very first day, is to kill my bone marrow, all of it, and any rogue myeloma cells to boot. It also kills all cells that rapidly reproduce: mouth, esophagus, intestines and all below that area. So.. there I was, over just a matter of days following the chemo, feeling that someone stitched together a long strip of popped corn and had sewn it into my throat, down my esophagus. I developed, as many do, Mucositis..which is just that: mucus areas are getting hit in a bad way. However, due to whatever luck, I developed not even ONE mouth sore. Thank GOD.

As I approached and then moved through the second week, swallowing water & food became too challenging as it was such a struggle to muster up enough courage to take my meds orally with water & keep them down longer than 10 minutes—I first had to have compazine just to take medication. It was after I went for two days without water or food (and desired none..had no thirst or hunger)..that finally I conceded: I said, “I think it's time to go all liquid.” I was SO happy. All food tasted awful by then (realizing now..it was not the food...it was me, and was part of what happens due to the melphalan.)

So now my breakfast, lunch, snacks and dinner all came from one huge I.V. bag that was ivory colored goop. Mmm, haute cuisine, eh? I gave up keeping track of all the things that began to be hung on my I.V. pole. In an earlier post in this blog of mine, I poked fun at my catheter..being paranoid about who & what was being done to me..now it was SO trivial. By the time the second week rolled around, I wouldn't have known or cared what anyone was doing with my catheter it was accessed so often. What are you putting in there? Motor oil? Chocolate milk? Sure.. keep it coming.

I asked if there was something I could have for the background discomfort/nausea that was ever-present. My old magic and super powerful pal, dilaudid, [my Migraine Day med de jour] was put to action. I had a very low baseline of the opiate going into me all the time, with an added option of a pump where could get an extra amount, but not OD on it. That was helpful. However... it put me into a constant state of wooziness/loopyland. Friends and family could tell I was not quite myself (though I tried hard to focus) and I did know it was effecting my ability to speak and sound 100% “there”. Frankly, I probably sounded like a combination of too much wine and drifting in and out of conversation. I was fully aware of when I'd drift.. but I was not in control of it..which was really really odd. I really didn't mind it to the point where I'd want to change it—because the alternative: excruciating “popcorn throat” and a higher level of background nausea was not worth it. I'd prefer being the Queen of Woozy Land.

The one scary part of what I believe was a side effect of dilaudid were the nightmares and dream scenarios. I can't begin to explain it... they were always dark, long episodes. Combination of being inside some twisted video game or classic fright movie (sans the blood & guts) but just bizarro scenes with people I knew and emotions that were very real. In fact, one night, I fell asleep at about 10:30pm..had one of those dreams..woke up at 11:30pm... drifted off again and woke up to having experienced an entirely new one...woke up at 1:45pm and said, that's it. I'm staying awake tonight. No more of this @#%&$.

I then discovered the sad state of affairs of television after 1:30am. I became familiar with the benefits of the SuperNinja: a food chopping machine. Other cooking machines that did everything but walk off the table for you, clean itself and jump back in your cupboard – ALL FOR 3 PAYMENTS OF $19.95!! (but I couldn't watch food prep on TV or I knew I'd hurl). Scores of women's facial cremes and makeup being pitched by TV has-beens; the most comical was an actual air brushing gizmo that blows facial powder minerals on your face.. as a “new” way to apply makeup. How freakin' ridiculous. And the backbone remains to be 10 billion exercise machines that will give you ripped abs in about, oh, 5 days, oiled, tan and of course on a palm treed beach. The way I felt, I'd rather just be ripped on something and feel ok. Forget the freakin' abs.

As the week prior to “Halloween Week”.. the creep movies were also on at night. I forgot how bad some movies really were. These were not the classic retro cute ones from the 1950s.. these were “newer” and not good. I'd rather watch a sweeper that sucks up bowling balls.

I'd flip between 24 hr news shows and noticed that the swine flu was on every show in every hour sliced & diced in every which way. And let's not even talk about “the balloon boy” and his warped family out in Colorado. I don't consider that story as “news” to be repeated over a multi-day time period. Let's hear real news, eh?

I concluded that I felt badly for insomniacs.

During the day, I initially had high hopes of reading a few books, etc...but it was so difficult to focus due to the meds and how I felt. Sleeping/napping was an escape.

I'd also find myself in dual realities.. that was curious--probably another dilaudid side effect. I'd be thinking about something...then, I could feel myself drift into another conversation inside of me about something completely different.. and then doze off for a nano second..and then I'd  “wake up”  and I'd be talking out loud about THAT scenario—stating full sentences. It was a little embarrassing when someone else was in the room with me..but, oh well, couldn't help it. I'm sure the nurses and all were familiar with this. One mentioned that often patients hallucinated seeing things on the wall that weren't there.. ughhh.. that would freak me out the door. But.. STILL better than feeling sick.

For the better part of ten days, I had new rituals that were the focus of my world. The items I kept on my rolling table aside a patient's bed, at least for me, were very important. Medicated lip balm, or you can kiss your lips goodbye through all of this. Some kind of hand crèam because you wash your hands like an obsessive compulsive. A pen and scrap paper; book; magazine; Ear plugs to lull you into sleep mode, for the room's air handling system keeps it pure and as germ free as possible but there's a constant noise of air-blowing 24/7. One night at about 3am the system went down for repair on the unit for 30 minutes and it was the most eerie sound: silence.

Other prized possessions included my pitcher for water/ice and not knocking over my my dreaded styrofoam cups. My lousy little cell phone—my link to the Outer World, had a charger cord that was just a wee be too short. If I had a dollar for every time I had to pick it up off the floor, or, pick up the combo remote that had the TV on-off and nurse call button, I'd be a millionaire in just 2 weeks, or at least it seemed that way. The constant getting in & out of bed got old quickly..as 10,000 I.V. bags of liquid can't stay in your body for long (well, not 10,000.. but it felt like it.) Always had to ensure I wasn't lying on my I.V. tubing; rolling my I.V. pole to visiting the sink to brush my teeth and rinse with this saline solution to reduce the severity of possibly mouth sores..and careful not to hurl as my body became so accustomed to that as almost a reflex to anything liquid in my mouth.. I had to keep focused when eating, drinking or at the sink at all times. These were all part of my routine, the only things that mattered. All this stuff was My World, not much else. I recall when my mother visited, my list for her as to what to bring was: an emery board, my nails became so brittle and they were shaped like I'd imagine Frankenstein's nails may have looked.

My feet + ankles swelled up for a few days and looked like little foot balloons; then I broke out in hives. Ah, the joy.

Looking at my reflection in the mirror was tough. Natural light was not complimentary. I've always enjoyed fooling around to look a certain way, taking pride in my appearance and trying to do the best with what genetics and God handed to me. Well, now, my capillaries were inflamed, my skin seemed to have lost it's life, color was sallow, skin around the eyes was weirdly red due to frequent pressure from vomiting or whatEVER.... who WAS that staring back at me? where the hell WAS I? Well, I figured the artist in me will be able to whip myself into cosmetic shape after it's all over..so, I talked myself happy again.

When I felt up to it, I did walk “laps” around the unit, wearing my mask..as I needed to keep active. Seeing other patients with all kinds of cancer issues similar and different to mine. I felt lucky again. I did develop pneumonia during that second week as well..and am still on medication for that..but it is subsiding.

The days continued.. as I moved closer and closer to The Day (or what I thought would be the day of discharge) Monday Oct. 26... I became more and more anxious to have this just be “over with”. My routines became old. My hospital bed was glaringly not my own. I began to feel like a caged animal. Funny, I watched Jack Nicholson in his performance as a werewolf in the movie “Wolf” with Michelle Pfeiffer.. he was made for that role, it was a shining star of one of the better Halloween/creep movies on late night TV that week. I felt like Jack.. just wanting to get the hell out..and run around in the woods, (minus the urge to attack people), but free of tubing, feeling sick and the whole thing.

When the day finally came, just a few days ago, I was packed and ready to go the night before. I finally got the “OK” when my potassium level was high enough, after needing 3 unexpected bags through my catheter that morning—the final thing. I would have walked home in the rain at that point. I felt like Scarlett O'Hara, pounding the land near Tara, but with a slightly different cry.. “As God as my witness, I'm not going to stay here one more night.”

Being back at my mothers' now before I head home to Allentown on Monday to have my catheter removed (YAY!) has been surreal. SOOOO happy to be in a place that's home. There's definitely something that chemo does to one's sense of taste & smell. Had a waffle with real maple syrup and it tasted like liquid bitter stuff on a mushy God-knows-what. Nothing remotely like great Vermont syrup and ol' Aunt Jemima and butter—very strange. My appetite is not back yet. I hope it returns along with my taste buds. I have to sample little bits here and there to see what it is that I can eat and enjoy. Certain things I cannot stomach at all. It's also as though someone turned the volume up on my sense of smell—I'm keenly aware of everything. One odd thing is I crave milk. I've always liked milk, never 'been anti-milk..but I can't get enough milk. Maybe I'm turning into a cat, a little known chemo side effect, eh?

The next piece on my health agenda is the results of a bone marrow biopsy at the end of November, coupled with some other things. If I am in partial or full remission, I will go ahead with the tandem transplant, which means, I repeat the entire two weeks, again, in probably January of 2010, which may boost my chances up to 85% or 90% to be in remission for a long time. (with just one successful transplant, it is more in the 40% to 65% range) and possibly maintenance level medication in either case. I like the higher odds.

At least now I know what to expect for the next time.

Should for some reason the transplant did not “take”..meaning it didn't really make much difference in my overall numbers and what needs to be watched for multiple myeloma, then the 2nd transplant will not take place..and medications will be the primary protocol. 

But as Scarlett also said... “I'll think about that tomorrow, for tomorrow is another day!”

And yes, even through all this, I still feel lucky.

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POST #9 - Reflecting Back: My Diagnosis Story

I’m writing this on October 18, also known as Day +5 after transplant. Today is a good day and I feel in the mood to type. The past 2 days have been ok, and since today is better than yesterday, thought I'd get in some more blog fodder. I”m propped up in a recliner in my room, with my sister’s Sony Vaio laptop a buzzin’.


It’s interesting being here and learning about others with cancer. Hope Lodge, the Cancer Society owned facility where my sister is staying for these two weeks to be with me during the day, is a place of relaxation and story-learning. Family members and well as cancer patients receiving day treatments can stay in this full amenity homey lodge while visiting Hershey. My sister has met several family members of people who are having their care at Hershey. Again..no matter what happens in my life from this point forward connected to cancer or anything else, I feel so lucky, words cannot express.

The first question that people ask me when they've learned of my status, is “How did you find out that you HAD this??” (multiple myeloma). I’ve done a Cliff Notes version of unraveling my multiple myeloma story. For those of you who have heard this.. feel free to skip to Post #10.

Long ago and far away in March of 2009, I went in for a blood series with my primary care physician.. cholesterol, etc. and I was anemic. Slightly anemic. I felt absolutely fine. I was not tired, no pain, no bone aches, no nothing.

In fall of 2008 my GYN shared with me that I was just slightly anemic, “.5” below normal..I believe I was 10.5 where normal was 11 of my hemoglobin, if I recall correctly. Understandably, she was not overly concerned as tons of women can be anemic by this tiny bit. The suggested was to take an over the counter iron supplement, which I was ready to purchase after our conversation. I spoke with the pharmacist regarding the name of suggested projects, and she shared that “..are you aware that these may make you very constipated”. I thought.. OH GEEZE! It was not a welcomed state to be in for various reasons..so I said to her, “How about if, first, I’d load up on spinach and red meat and see if I could pull out of my anemic state with doing that, versus taking one of these products? So I self-decided this is what I’d do.

A few month’s passed and it was time for me to have regular blood work done for cholestral, etc. through my primary care physician. I had forgotten to have it done for a while (like, a year).. so I thought now, March, was a good time to do this, and it's how the ball got rolling.

I went to my PCP for the bloodwork. After my blood series came back “fine” except for being anemic, and I shared with him about my prior knowledge of beng anemic..he checked my counts last fall and now, I had now dropped a full point..so I believe I was at 9.5, down from 10.5. That is not normal, so I learned. “Well, your b12 and iron are fine..so something else is causing you to be anemic.” If my memory serves me correctly, it was then that I asked him what can cause anemia that could be concerning? Multiple myeloma was in the possibilities discussed, which was fine, well, fine because it was explored verbally in our conversation, it was not yet an “it” factor. I tried to wedge into the conversation that “Gee..couldn’t this anemic state just “be me”? ..or, how about that I’m probably peremenopausal? Or.. or.. or.. My PCP smiled and said, “well, anything is possible..but, “I want to investigate and vampire you a bit and do a big series”. I agreed of course. Those results came back within a week or so. I went back to his office and he had that “look”, which in 15 years of seeing him and not having any out of the ordinary issues, that “look” was a bit different. He said something like.. “there are some things present in your blood that indicate something is going on”….and as the discussion continued he said it was time to referred me to a hematologist-oncologist specialist .. and did I know any at my hospital where I worked? Well, sure. We agreed on a name and he PAGED him. I thought hmmmm.. PAGE vs. PHONE.. not good. My physician said, “I have to leave for a conference tomorrow…but I want this all buttoned up with the oncologist before I leave.” Oh geeze. Maybe I was obsessing—whatever. I believe the oncologoist prescribed yet another blood series to be conducted & turned around rapidly. Then when my oncologist delayed the start of his vacation in order to meet with me regarding his blood series results, I knew I wasn’t in Kansas any more.

I had already Googled endlessly about MM and the next few days. Multiply that by about a trillion, and that’s how much my sister was researching MM. We wisely kept my mother in the dark, as, we didn’t have face-to-face 100% confirmation yet..why pass worry that is not confirmed?

So, as I was gathering the entire scoop on MM from my oncologist, I asked my sister to join me about 20 minutes into our chat.. even though I remained calm and his words were resonating based on some of what I found through research..it was still a lot to take in. My sister took copious notes & asked questions based on what she knew through her research, which was voluminous.

As luck would have it, 8am the next day there had been a cancellation for a bone marrow biopsy and I was sliding into that vacant spot! That would be the final “confirmation” of the condition, and, would also show more. I also had a Pet Scan.. (or a bone scan? memory fade..must be my current drug load) …a painless xray of my entire body. It revealed a few small lesions in my skull..which wasn't too bad and pretty typical. At least my bones didn't look like a dalmatian.

The bone marrow biopsy was interesting. I had read up on what it was like, and it wasn’t too bad really. It was weird and uncomfortable vs. just painful. Local anesthetic injections and conducted by a physician who’s done about 10,000 of them, literally, made me feel ok.

Always inquiring about what’s going on during a procedure..[hey, when someone is sticking a needle in your bone, you're focused on every second of the experience..] ..I asked him “This procedure must be challenging when a patient is obese or morbidly obese? ”.. he almost paused and said “You have no idea”.. and went on to say that in some cases, the sample must be obtained from the breast bone.. a place of least fatty tissue.” Ugh. I was glad I've kept myself in relatively fit condition...but I suddenly I wanted to jump off that table & sprint to the fitness center.

The biopsy was conclusive. Multiple myeloma was now part of my life, but not my life.

I also learned my chromosomes were “good”. I had not at that point realized why my oncologist was so happy as he delivered that piece of news. I know now. I have the most common form of multiple myeloma. Yeah! I was prescribed three medications. (1) Dexamethazone or decadron, a steroid (2) Revlimid, or lenalidomide, a med that was found to attack MM when coupled with DEX (3) zometa, a bone builder, similar to what Sally Fields wails about on TV, boniva.. this med will be a once per month I.V. drip.

SHOCK AND AWE

I purchased DEX in our hospital pharmacy. I was informed that Revlimid would be shipped to me directly. Fine. So I had to begin taking all 3 meds on a Monday. The Thursday before that day, I had a phone call at home from a company called “Biologics”, the distributor for Celgene, the Revlimid manufacturer. A very friendly and helpful woman said to me “I understand you’re starting Revlimid soon?” I said, “Oh yes, Monday!” She continued, “We’d love to send you your prescription, however there are a number of forms to be completed and you need to take an online survey about this medication as I does have significant side effects for women who are still in their reproductive years, and it also addresses birth control.” (oh LORDY!)

So, of course, I would go ahead and do what needed to be done, surveys and all, just so I can get this med on time to start taking it! Upon me finishing the highly personal surveys, she and said, “How would you like to pay for this?” I said, well, I believe my insurance will cover it, and she then contacted my insurance co. and was told I could submit paperwork later. However, I needed the medication NOW to begin it on Monday. I said, “Just send it along to me.” She said, “We can only ship with confirmed payment. How would you like to pay for this?” I realized then it was my turn and I needed to anty up. I said, oh, ok, do you accept a personal check? Visa? She said “No personal checks. We take visa, MC, or a bank check…and, this is a very costly medication.”

Hearing that, I was envisioning maybe $1,000 thereabouts. I said, “What are we talking here for this prescription for 21 days of pills?” She replied: “$7,555.84.”

If you haven't guessed, this was the “shock and awe” part. I must have looked like one of those cartoon drawings where the eyeballs bulge out of a character's head, or what comes naturally to Jim Cary in his roles. I said, “OH!” and oddly, burst into tears. That wasn’t because I couldn’t pay for it, but it was the simple shock of it all. I had managed everything for the first week really well….though I was still on emotional Bambi legs, then, this hit. I put it on my visa card as it was the quickest and medication arrived FedEx the next day. I was at the office and someone has to sign for a FedEx package so I wrote an email to everyone in the suite stating “To All: a $7,500 medication is being delivered to me today..please sign for it & page me when it arrives”.

It took several weeks for this to be ironed out and I was thrilled when I was told Revlimid would be fully reimbursed and covered under my insurance.

I was on revlimid and DEX since April 2009 up until late August. No extraordinary side effects. Revlimid was 21 days on, 1 week off. I believe it kept my blood pressure happily low, thus, no meds needed for my hypertension—a condition for which I had been taking medication for over 10 years.

DEX, 40 mg every Monday, became predictable as far a side effects. Hyped up on Mon/Tues an difficulty sleeping, but melatonin helped. Tuesday, my face would turn red in my cheeks and I'd look oh-so fit and sunned. (sigh) but it would go away the next day. Then there was the Gain-5-lbs-in-one-day phenomenon. It'd melt off by Saturday..only to start that and the rest of the side effects again on Monday. But.. those two meds made a big difference in the numbers that were being closely monitored by my hematologist oncologist over the spring and summer.

I visited the the Hospital of the University of PA's MM program, as well as Penn State Hershey's program as potential locations for the transplant process. Both are excellent. I'm very very happy with where I am right now.

So that's how this all began for me. What a year, eh?

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POST #8 - Let the Games Begin

Today is Wednesday October 14. Even though this Posting on my blog will appear much later, I wanted to capture my experience before it faded. This Posting is about my first 3 days at Penn State Hershey Medical Center, of my two-week stay, including chemo and transplant.


I was all set for my Monday October 12 trip to Hershey, or so I thought. I woke up at 3am Monday morning with a migraine-level headache of a LIFEtime. My conclusion was, perhaps pent up stress and anxiety had arrived and packaged itself in the form of a headache that included being physically ill, if you get my drift. All I knew was I was in 100% agony on my Important Day. Hershey called with the preferred estimated time of arrival & we agreed on “before noon”. I shared that I was suffering with a wicked headache and was told nicely “well, we have wonderful drugs here that can help”. That was the only smile I managed that morning—I was determined to get to Hershey in record time.

So, there was my sister, driving me to Hershey in her red PT Cruiser, I was sitting in the passenger seat with my red & black scarf pulled over my face to keep the sunlight out. For anyone peering the window as they drove by, it looked like some wacky kidnapping. We arrived, and were told beforehand to walk right upstairs to the unit without need to stop at the main desk. As my sister did the valet parking thing, I waited inside main entrance doors, standing by the beautiful new hospital map, with my head in my hand, obviously in pain & probably downright scary looking. I was now a patient in pain. People were staring at me. I could care less. As we approached the elevator tower, I was losing ground—I HAD to get up to that 6th floor for the DRUGS or I’d know the reason why. Just like in an annoying scene from a movie or TV show, the elevator took forEVER, then finally we entered one of the three that was finally free, and four other people had to re-open the doors to hop on. I tried to say calm, thinking.. “hmm..they too have somewhere to go, to heal the sick.” Then, a final person had to also enter our elevator pushing a huge cart of equipment. I said out loud: “I’m not moving” and if my lip curled, it did then. The cart-pusher did end up wedging it on our elevator though, and we ascended, stopping at every blasted floor. Jesus. Just get me up there, please.

So, on the 6th floor we walked down a long hallway,and around the corner was the Cancer Institute unit behind double doors. We were met outside the doors by a nurse holding a chart and she said “Are you here for room 6127?” I said, ”I’m not sure about that, but I’m Jody Millard, I’m here for the next two weeks – TAKE me.”

As I got acclimated to my room, imitrex was ordered, but was slow coming up from the pharmacy. I had already been ill repeatedly that morning and I was certain that pattern would continue. My physician and others came by shortly after my arrival and we discussed the headache. He ordered dilaudid, an opoid. Yep, not-your-father's-painkiller shall we say, as it was a bit higher than morphine (or, was that me?) Anyway, I must have really indicated how much pain I was in.. and, he was concerned. As it flowed into my catheter I felt a woozy rush and my headache went away in what seemed like 90 seconds. LOVE IT! Even though it did make me ill, it was not a big deal. I HAD NO PAIN.

So, I began to receive my medications prior to chemo, more anti-nausea meds. I was already in a nice woozy state so I welcomed anything into that catheter, bring it on! Chemo started at 5pm. Thirty minutes prior, I had to chew on crushed ice. This I’m told would decrease the percentage of the severity of mouth sores from 75% to 25% in about a week or so from now. Oh goody. My mouth was numb by the time the chemo started, so, even though the chemo was strong—with all the prior medication-- it was manageable. My episodes of illness (aka vomiting) weren’t bad. Actually, it’s unlike being ill from a virus or food poisoning, . It comes upon you rapidly, it “happens”, then, it’s over. So, my day had about a dozen “episodes”..my pink basin and I were friends by then, but I bid him farewell by evening. Little did I know I'd be marrying that basin, or so it would feel, in the next 13 days.

I didn’t sleep at all on Monday night, but oddly, I felt ok. Having never stayed in a hospital overnight before in my life, this was baptism by fire. Overnight due to cancer, not a broken limb or some other thing. But—the overnighting experience was fine. The sleep loss was probably due to steroids.

While awake, I thought about writing this posting. I thought about changing my furniture around in my home to accommodate my new flat screen TV. I thought about redecorating other peoples houses. I thought about work and was going on. I thought about my cat being tenderly cared for by friends, I thought about how great it was that I was here and everyone knew what was going to happen next. I thought about how lucky I was.

Tuesday (called Day 0 in Transplant Land) was the day that my stem cells would be infused into me. So the troops entered the room at about 11am. The person from the blood bank wheeled in a dry-iced container with my stem cells in 2 bags. A triangle of conversation took place to triple-check the accuracy that my cells matched me, each person read my wristband/label on cells/label on order which was most all reassuring. They were indeed MY cells, the same ones I had spent 10 hours “giving” at Hershey just 3 weeks prior . The nurse practitioner actually did the infusion directly into my catheter with my physician present and a second nurse standing by and my sister as my guard.

The infusion was another weird experience, but again, manageable.

Because my stem cell collection was “good”, I only had two large syringes of stem cells destined for me, about 2 million cells. The team shared that sometimes an infusion requires 15 or 20 syringes for one patient, based in part on how well the collection had gone or if ones' stem cells were not strong due to prior chemo or other reasons—more vials are needed for the same final count.

Anyway, these were thick sausage-wide syringes. Eeeew. The Nurse Practioner began the process and I was forewarned about experiencing things like nausea, shortness of breath, feeling overheated, etc. As she pressed my cells into my catheter, I instantly felt like a low ember fire was making its way through my body. At first it was heat, then, it was more like a peppery feeling in the back of my throat. It felt like someone put a bit of lite Tabasco sauce or pepper in my throat and I needed to cough for no real reason as nothing was actually there of course. It wasn’t comfortable. The idea of having 20 syringes would be quite a challenge, but of course I’d endure it if that was what was needed. I’m grateful that it was just two. I had been told there’d be an aroma of creamed corn, something I never did end up sensing...but others could. My sister confirmed even hours afterwards that yes, it was in my room wafting around. Never knew it. For about 20 minutes, I had 10 eyeballs (though very friendly eyeballs) staring at me in silence as the NP was infusing me, which added curiously to the experience . In hindsight, the eyes made it more comfortable as they were all focused on me.

The infusion ended. I felt unsettled the rest of the day on Tuesday, no other way to describe it. I needed anti-nausea medication to enable me to sleep and I did so.

Wednesday “Day +1” (the day I’m writing this, Oct. 14) .. has been terrific! I feel super! I can eat (a little) and my sister and I did two 20 minute walking laps around the unit. It felt great to be out and about, even if it wasn’t far from my room, it was great.

My infusion NP stopped by and updated me with detail about “what’s next”. That was a boatload of information that was a bit new. I learned today that about 6 days from now, my white blood count will be dropping and it’ll drop to it’s lowest point. My numbers will be bottoming out , though with my stem cells, they’re fighting for me at the same time. I’ll be most susceptible to infection and from then, all will start to rise. Interventions may include continued need for acid reduction for my esophagus (as chemo weakens cells that reproduce the fastest: mouth, esophagus, mucus membrane areas) , neupogen to build blood cells, and possible blood transfusions. It is expected that I may get some kind of infection and then I’d have chest xrays, maybe a CTscan to find out what’s going on.

This concludes my update on my first 3 days. Chemo and transplant are now officially “history”. More stuff to come behind the remainder of my stay, but I'm game. Life is bettering!



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